polar bear jams_SQ

Clapping, waving, pointing. For the longest time these have been descriptors for Jasper’s cortical visual impairment, explaining what his vision is, and what it is not. Well, he still doesn’t clap, wave, or point. To countless store clerks who insist on waving goodbye to young children, We’re still working on bye bye…. I say, smiling and walking away. We have practiced each one – clap, wave, point – in context, for over two years. Practiced. In our failed PEPS group, when Jasper was about a year old, another mom described her highlight of the week: when she came home from work, her six month old baby, waved to her, she squealed. Had you been practicing?? I desperately wanted to know. How did she get her baby to do that? And how could I get my own, older baby to do that? And what’s so great about waving bye bye after all?

The first time I spoke with Dr Christine Roman, in July 2012, I described Jasper this same way, He doesn’t clap, wave or point, I said when she asked about his vision. Children learn gestures through imitation, Dr Roman replied. In children who are visually impaired, these behaviors are either delayed or absent. I ignored the word absent and focused on delayed, which applied to much of Jasper’s development. Absent was too hard to think about yet, it required another level of acceptance that I was not prepared for. By its nature, and especially with appropriate interventions, cortical visual impairment improves slowly, over time, though to what degree for each individual child, is unknown. So acceptance does not happen all at once, but is spread out over years.

What’s so great about pointing? For kids who are nonverbal, pointing is a powerful form of communication. The absence, or delay, of pointing was a huge obstacle in Jasper’s communication, in his preverbal two and half years or so. And explaining why Jasper could not or did not point (yet) became a huge job on my part. Pointing does not happen until kids are in Phase III CVI (Roman), I rattled off to therapists, mostly speech therapists. Follow that with a description of the CVI Range, its significance, learning by imitation, Jasper’s place on the CVI Range, and the hope that one day we would reach Phase III, and by the end it was a thesis.

One night about a month ago, Jasper was laying in bed, looking up at the light above before I turned it off. Raising his arm toward the ceiling, he lightly lifted his middle finger and pointed at the fixture and said, Yellow, one of his favorite colors and his preferred color, yellow jumps out at him in the world. We were at home, so I was the only witness, and was stunned. Did he really just point to the light?? There was no one to ask for confirmation. I stayed silent, watching and waiting for more.

The point has happened a few times since, usually the incandescent light at bedtime. Today at school, waiting outside the classroom, Jasper looked up at the lights, pointed and said, Yellow. Trying to encourage another point, I turned him in the direction of a large yellow paper painting on the wall across from us and asked, What else do you see that is yellow? But Jasper did not respond, his classroom door opened, and he and his toddler peers shuffled in, uncertainly. Once in the room, Jasper again looked at the lights, pointed, Yellow, he said. Twice in a row. Did you see that…he pointed, I told his teacher. Jasper is pointing, his teacher called over to the speech therapist, nearby, a surprised look on her face.  After class, our SLP confirmed – Jasper pointed at a picture of the food he wanted at snack.

In my mind, Jasper’s spot on the CVI Range moves ever closer into Phase III. Like a thermometer sitting in the sun on the coldest winter day.

Originally published here on February 3, 2014.

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